Could Use Some Insight.
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Hi Joe,
Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear about your mum. But glad that you have joined in with us as you are so in the best place for support and help and you’ll get loads of each from everyone here. Not much that I can add to what the others have already said to you but just wanted to say hi and welcome you here.
I know that your head is spinning right now with everything that is going on at the moment, that is common and I went through that after my dad was diagnosed in 2008, we all go through that. But you have so done the right thing in coming here and seeking answers and the better informed you are the better all round you will be when it comes to helping your mum.
Please keep coming back and let us know how everything goes. We are here for you and we care.
My best wishes to you and your mum,
Gavin
Hi Joe,
My mother was diagnosed 13 months ago and after starting surgery, they determined her ICC was inoperable and closed her back up.
Many when first diagnosed and deemed inoperable are given grim survival statistics. We were also told that chemo only adds on average 3 months. However, we were not told early on about other targeted approaches and how many folks out there who are alive much longer with this disease. Although we have only gone to one hospital, we have a team that is comprised of a surgeon, oncologist, radiation oncologist and interventional radiologist.We have been through chemo and will be going for a second SIRT (radioactive spheres) treatment in a few weeks. Although it sounds like a lot, we have had months of treatment-free time and she is still feeling fine. This next SIRT treatment is an agressive attempt to go after the tumor while she is well.
Although this is a horrible cancer, there is hope.
Good luck,
CatherineJoe, I can best answer your question by telling you about 4 CC members, who were diagnosed at major cancer centers and given a “no hope” prognosis and thanks to our site and being able to share my story they came to see my “HERO” and had there prognosis changed and were deemed operable, 3 had resections and one had a transplant. (Mayo Clinic told him he wasn’t able to be transplanted).
Our cancer is so rare, and most doctors haven’t heard of it and don’t realize there is cutting edge research being done. It is so important to have a doctor who is at the top of his game in CC,. a GREAT oncologist will be that or a GREAT oncologist will know this is out of there league and find you that GREAT oncologist and team of doctors!!
Lots of prayers for HOPE-CathyJoe….I too would like to welcome you to our site.
I have a few things to add our Cathy’s quick response to you. I agree with her in that all patients should inquire about eligibility for liver transplantation. A select few patients (Stage I, II) may be eligible for liver transplantation however; unfortunately, the majority of patients are diagnosed at later stage, Phase III or IV. Not sure where your Mom falls in the equation, but you would want to know for sure.
As mentioned, you would want a second opinion from a surgeon “very” familiar with this cancer. You want to be absolutely sure that a resection cannot be performed.
This link might be of use to you:
http://www.ucdenver.edu/academics/colleges/medicalschool/departments/surgery/Pages/Welcome.aspx
You will also want to meet with an oncologist experienced with this cancer. Please ask how many patients he/she has treated.
Also a radiation oncologist – same question – how many patients have you treated with CholangiocarcinomaDiagnoses of this cancer can be very difficult to make and patients and caregivers have to learn quickly and efficiently. It is not easy, Joe, please allow yourself some time to wrap your head around all of this. Ultimately you would want to be able to make educated decisions and those decisions can only be based on prior education.
You may also want to take a look at specifics offered on our site:
For the newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/This free, complimentary Book or e-mail download will help you understand this disease
http://cholangiocarcinoma.org/news/foundation-resources/I hope that others will chime in as well. Collectively, I believe, this board is a treasure of wisdom, knowledge and experience.
Hugs,
MarionThanks Cathy. And congratulations.
In your opinion, or anyone else’s for that matter, why is a CC specialist so critical as opposed to a great oncologist, or whatever? I know that seems like a stupid question, but I’m trying to get a handle on what makes CC so unique as compared to other cancers. Or is it?
Joe, Welcome and sorry you had to find us! I am excited to be the first to reply, because I am a CC survivor, 5 years cancer free, there is HOPE!!! First take comfort in the fact your doctor was so knowledgeable to not accept a negative report, CC often comes back negative and a less educated doctor would have accepted it!.
The next step after talking to your doctors, is think about getting a second opinion. Our cancer is so rare that you need a doctor that has treated CC and is open to all options and knows what trials are out there. A second opinion will validate what you already know or will have a better prognosis..
My hero is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO., Dr. Javle at MD Anderson is another miracle worker you will read about on this site and another and the Cleveland Clinic in Ohio has a surgeon Dr. John Feng (Might have his name wrong). These are all great doctors that have really brought a lot of HOPE, care, and positive results to many of our CC family.
I have an amazing story to share and keep it posted at http://www.catherinedunnagan.com I was diagnosed 6 years ago and there wasn’t a lot of positive post being written, but in that short time, so many people are posting amazing and positive options and treatments!!
Please feel free to email or call if I can help or you just want to talk. (618-567-3247)
Lots of prayers for healing and HOPE!! CathyMy name is Joe and my mother has just been diagnosed. It’s not 100% official yet but all the signs point this way. She’s had two ERCP’s in the past two weeks. The first one the biopsy came back negative but the doctor basically told me to ignore that he was pretty certain the news was bad.
We had the second one yesterday at University Hospital in Denver, which had more toys to employ. It was different G/I doctor, and the biopsy hasn’t come back yet, but he’s just as certain as the first guy. Both doctors have told me that based on what they’ve seen they doubt surgery will be an option because of the location.
I’m trying to figure what I need to know, because no ones sits you down and tells you how it’s going to go in terms of steps here. Its just this continually hand-off, and not necessarily in a bad way it’s just what they do.
Here are some of my questions:
*Is my next conversation going to be with an oncologist, surgeon, both?
*Are those typically the same person or different people?
*What do I need to have an order before this next step?
*How do you know if you working with the right person?
*This facility is enormous and they say they have people that deal with this disease, but how do you know? What am I looking for?
*I asked the PA for the name of someone here who works in this area, and the name he came back with was Dr. Steve Leong. Out of curiosity, anyone have experience with him?I appreciate whatever advice you have. Thanks.
Joe
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